Why Migraines are not “Just a Headache”

Blue Electric Brain

Introduction

I saw this image on Pinterest and it made a lot of sense to me, so thought I’d steal it, then it inspired me to write about my own experiences with migraines…

Reasons a migraine is not "just a headache"
Reasons a migraine is not “just a headache”

My Migraine History

I’ve suffered from migraines for about 5 years. For three years they were absolutely horrific. I suffered from cluster migraines where they would come on suddenly and ease off and come again even bigger and more painful and then repeat, these would last for 1–2 weeks if I was lucky, sometimes up to a month. But I generally only got a few days of rest until the next one came along.

The Stages of a Migraine Attack

The Aura Simulation

The first part of any migraine that I have suffered from is the aura phase – the visual disturbances, the early warning sign. It’s horrible and there is nothing you can do about it, it’s coming whether you like it or not. Trying to explain to someone what this phase of a migraine is like is difficult if you haven’t had even a minor migraine in the past. But it’s like you are going blind, you can’t see or focus on anything. The more you try, the worse it gets.

There are a few YouTube videos out there that try to demonstrate what the aura phase is like, the two below are what I think is as close to what I suffer with, although mine cover much more of the vision.

Disclaimer – if you suffer from migraines, do not watch these videos as they will likely be a trigger. You have been warned.

The Pain of a Migraine Attack

As a migraine attack started, I couldn’t see, I couldn’t function, couldn’t get out of bed, the pain was absolutely unbearable to the point of wanting to slice my own head off. Sometimes I couldn’t even put a sentence together and you have a sense of absolute confusion like your brain has just stopped working.

I’ve read that for most people, the aura and pain phases only last for around a few hours. I wish that was true for me. The aura phase would last for anything up to six hours and then the pain would come after that. I have been in extreme pain for eight consecutive days during one attack. Rarely would I have the pain for anything less than a full 24 hours.

Unexpected Side Effects

Mood swings are the norm and you cannot tolerate any sort of light or sound whatsoever, not even the dim light through the curtains in the day.

Sickness, diarrhoea and unbearable pain all virtually constant. Being sick increases the pain, then the pain makes you sick. There is seemingly no escape from it.

Eating and drinking is difficult as it is usually thrown up within a few minutes anyway.

Postdrome Phase

When you do come round you can’t concentrate because your brain is trying to recover, this is called the postdrome phase and it’s like the worst hangover you can imagine but times it by ten and you might get close to how it feels. This too can last for days.

Depression and Anxiety

Then depression kicks in as you feel there is no escape from it and when you do get the odd few days where you are not suffering, you have crippling anxiety because you are just waiting for the next attack to happen.

At one point through a series of particularly bad migraine attacks, I took very serious consideration to stop working. I was struggling to even go to work and when I did go to work, it was usually in a postdrome state waiting for another to happen. This made my job incredibly difficult to do and I just had the constant feeling of letting people down and I was near breaking point. But I had worked for so long to get myself into a good position that I was not going to let these migraines take my career from me.

Then you hear someone say that it’s “just a headache” and you want to kill them, but you barely have the energy to even argue the toss.

Drugs and Treatments

To begin with, my GP wasn’t much help. Just the usual:

Plenty of fluids and take some paracetamol, rest in a dark room and avoid any possible triggers”

After rest, water and paracetamol failed to stop the migraines, I was given some sickness pills, which I swear made me sick rather than stopping the sickness and eventually I was given some pills to take when I felt a migraine starting. These were Sumatriptan and these did not have any effect on me at all. If anything they just made me feel sicker.

Hospital Visits

Over the years, I have been in hospital four times for reasons directly linked to migraines. I have no doubt that would have been five if we had been in the UK instead of Spain when I had a Vestibular Migraine when on holiday.

Three of the times I had been advised to go to the hospital after calling the 101 non-emergency helpline. But once, the 101 helpline sent out an ambulance to me and when the Paramedics had checked me out, they told me that I had to go to the hospital again and took me by ambulance.

When at the hospital, I have been treated with Aspirin and drip fluids. Unfortunately, there is not a lot a hospital can do for you anyway but the reason I have been in hospital is due to my high heart rate at the time more than the migraine itself.

Informed Diagnosis

It was now the third Christmas in a row where migraines were still affecting me. I was driving from Manchester to Birmingham on Christmas Eve and bang, migraine attack out of nowhere. Luckily we were just approaching Stafford services and I managed to get the car parked before the aura phase kicked in (see above videos…)

I ran into the toilets at the services and was throwing up for about 15 minutes. It’s painful, it’s degrading and it’s embarrassing when it happens in private, when it happens in public, you just want the ground to open up and swallow you up.

After eventually making my way back to the car, we sat and waited for a bit and it had seemingly passed, although I felt rough, I was OK to continue our journey.

Then, on Christmas Day, another migraine attack. The same process followed; sickness, pain, sleep, pills. My son’s first Christmas and I was in bed throughout.

Christmas Out of Hours Clinic

On Boxing Day, things were still bad and so we ended up having to go to an out of hours clinic in Birmingham. The place was absolutely packed with people with snotty noses or sore throats. The number of people that basically had a cold was truly unbelievable.

We waited for about four hours. Four hours of being crammed into a tiny GP surgery with chavs everywhere complaining that their little ray of sunshine Chesney needs urgent medical attention for his snotty nose. I do not know how Doctors restrain themselves with some people!

I just sat there with my hoodie over my face trying desperately not to throw up over Chesney and his snotty nose. After the bloke in front of us left as “he had some gear to pickup now his mate was here”, we got shifted into a back room. This room was five times the size of the waiting room with the 500 people in it, so we finally got some fresh air away from Chesney and his snotty nose and the distinct smell of Joop that most had obviously got for Christmas.

After waiting for about another half an hour, we finally got called through to see a Doctor. He sat there and listened to everything I had to say and the full list of symptoms I was having, even though I felt like a complete hypochondriac he genuinely seemed concerned and wanted to help.

We were with him for about 30 minutes whilst he explained in great detail the sort of migraines that I was suffering from. It turned out that it wasn’t just an average migraine, but a cluster migraine which is much more severe. This is where I learned about the “waves” of migraine attacks and why they happen. It basically comes down to blood vessels popping in the frontal part of the brain over and over again.

Although he couldn’t really offer me any long term solutions not being my GP, he did give me a prescription for some stronger painkillers and said he would write to my own GP in Manchester so that we could discuss better long term treatments.

I was delighted, I felt like someone had finally listened to me about how bad these migraines were and understood the reasons why. It wasn’t just something I wasn’t dealing with very well, it was a neurological condition that needed to be treated correctly.

Amitriptyline

I got a letter from my GP asking me to contact them and it was in relation to the Christmas out of hours visit. I rang up and made an appointment and went to see my GP. He recommended that I should now try preventative medication as reactive medicine was not enough to combat the type of migraines I was suffering from. He said that I should try Amitriptyline, it’s an anti-depressant drug but can be used for the prevention of migraines as well at a lower dose.

The plan was to start me on 5mg to be taken at night and work my way up to 50mg. I started on them at the 5mg and I had terrible vertigo for two weeks, but I battled through and over the next three months my GP upped my dosage to 50mg. The side effects, like vertigo and sickness, started to become less and less with the higher the dosage I was taking.

Since then I have only been suffering from migraine attacks maybe two or three times a year. When they do hit, yes they are as bad as they were before, but it’s not every day, it’s not constant anymore.

It has changed my life and allowed me to get on with my life and career. However, these too have their drawbacks as most drugs do. They are like a sleep coma in a tiny little pill. Anyone on Amitriptyline will tell you the same story, waking up in the morning is hard work, I have three alarms to wake me up right now and the radio alarm clock and still some days it’s not enough. Most days my wife has to scream at me to wake me up, then it takes a least an hour to function anywhere near normal as your brain is still asleep.

Then there is the dry mouth, waking up each morning like you have been eating sand all night long. It is a horrible feeling but a litre of water, a good brush of the teeth and it’s fine.

The only thing I am still struggling with is that I suffer from pretty bad panic and anxiety attacks at night. Some times I just have to get up, so and make a drink and watch TV or check my emails at 3:00 am – just something to take my mind somewhere else. This obviously then affects my sleep so I’m tired all the time.

But trust me, these side effects are nowhere even close than the alternative.

The Spanish Relapse

Last summer, I had not had a migraine for a while and I was feeling as well as I had done for a few years. We had booked our annual trip to Spain to see my family that lives over there and we were all excited to get out there for some sun and relaxation.

We jumped on a RyanAir flight, my Uncle met us at the airport in Alicante and we drove off to Moraria for a week of peace and quiet.

My Auntie had made us a nice dinner which we all sat outside on the deck and I had one small beer with my dinner. For various reasons, I don’t drink usually. I’ll have the odd one or two at a wedding but most of the time I’m driving anyway.

About an hour after finishing my dinner, I went into our guesthouse at the side of the villa and started to feel really dizzy. I didn’t think anything of it at the time and thought I’d turned into a proper lightweight these days!

We had been up since 3:00 am for the early flight out to Spain so we watched a bit of TV and was tucked up in bed by 10:00 pm.

Around 2:00 am, I woke up and I felt really sick. Then as I went to sit up in bed, the room was spinning and I couldn’t even hold myself up. I couldn’t feel my legs or my arms. I somehow managed to throw myself out of bed and in the process, I smacked my head on the bedside cabinet but it barely registered with me.

I kept trying to stand up or even just to sit up, but every time I tried to move, I just collapsed. I then smacked my head on the tile flooring and I knew then that something was really wrong.

I shouted at the wife to wake up and she didn’t have a clue what I was doing and whether I was just mucking about or not. I wasn’t.

I had to try and get to the toilet as I was going to throw up, but even though the wife managed to drag me to the toilet, I couldn’t even sit up to reach the bowl to be sick. With the help of the wife and some serious toilet hugging skills developed from my teenage years, I managed to get my head in the toilet and I was throwing up for ages.

Then a pain in my temple like I have never felt before stabbed right into the side of my head. I had never suffered pain like that before nor since. I couldn’t talk, I couldn’t walk, I couldn’t do anything at all.

After about an hour of this, the pain slowly started to go away but I still couldn’t use my arms or legs. My wife managed to drag me into bed and eventually I managed to get back to sleep again.

In the morning, I wasn’t as dizzy and I managed to sit up in bed. I swung my legs around and try to stand up. Then bang – back on the floor again. I could not use my legs at all, they simply did not work.

I got back into bed and then spent the whole day and then the night in bed. For the next three days, I couldn’t walk. I then got up and I could finally stand up, wobbly, but I could stand. Gradually the feelings in my legs got better and we were then able to enjoy the rest of our holiday.

What I wasn’t telling anyone though was that I couldn’t feel my left foot – at all, I even stuck a folk in my foot and I couldn’t feel it. When we got home, I fessed up to the wife that I was still in pain and I couldn’t feel my left foot, leg or top half of my arm. We immediately rang our GP who saw me straight away and he then said that I had the symptoms of a stroke and I needed to get to the hospital as soon as possible.

So we head down the to the hospital and we were there for around 16 hours. I had numbers scans and x-rays and I had been told that I had one of the following which seemed to change with each passing hour.

  • Trapped nerve in the back of the neck
  • Broken back
  • Broken neck
  • Nerve damage
  • Mini-Stroke
  • Stroke

After waiting for a whole day at the hospital I was fed up, tired and hungry and was about to pack up and go home. Then, a Neurologist Consultant finally turned up and took me to a cubicle.

He performed a load of tests, both physically and verbally and could see that I had no power whatsoever on my entire left side. He went through the results with me and said that although it is hard to tell as the incident happened over 9 days ago, I did have all the symptoms and responses as someone who has had a mini-stoke and that is what he would diagnose it as.

I was shocked, not even 40 years old and I’d had a stroke. I was gutted. It takes a lot to really upset me but this hit me hard.

The Neurologist wanted to confirm this though and sent for me to have a full MRI scan at the hospital when an appointment is next available. The appointment finally comes through the post and I go and have the full MRI brain scan at Bury Hospital.

I went up to Bury and had the brain scan done in the mobile truck and trust me, if you are claustrophobic, you do not want to get into an MRI scanner! It was like being in a coffin, I hated it and was in there for around 45 minutes.

A few weeks later I had a letter saying that my MRI scans were fine and that there was, in fact, no damage to my brain, which indicates that I actually had not suffered any type of stroke.

I was obviously delighted but now also more worried about what did happen that night in Spain and why can I still not feel my left leg and foot.

Vestibular Migraine

I had a letter from my GP surgery a few days later asking me to call and make an appointment, which I did and then attended the appointment.

Sat in the waiting room, my GP eventually called me into his office and the first thing I want to know was whether I had a stroke or not as it was very confusing, I’d been told that I had by two doctors at the hospital but my GP did finally confirm that I did not have a stroke. What I had actually had was a very severe and quite rare Vestibular Migraine.

Vestibular migraines are indescribably painful and can have the exact same symptoms as a stroke. The pain is so bad that there are study’s out there that say it can be worse than childbirth, kidney stones or broken bones. I’m not saying it is, but these are what the study’s state and I can confirm that they really hurt!

I’ve been told that the partial paralysis on my left side will eventually wear off but could take up to 24 months to fully heal. This is due to the amount of stress put on my body during the Vestibular Migraine.

Triggers

My GP and the worst doctor in the world (Dr Google – never Google your symptoms!) always state that you should figure out what your triggers for migraines are and then avoid them. Simple as that.

This is such a frustrating thing for a migraine sufferer to hear. It’s so hard to fully find out what a trigger could be, for me, I did come up with a few things that I try and avoid now where possible.

  • Flashing Lights – Christmas is a great time for migraine sufferers with flashing lights everywhere. It’s difficult to avoid flashing lights but if you can then do it.
  • Driving in low sunset or sunrise – This is where the sun not only dazzles when driving, but the worse bit is when the sun flickers through the trees. It’s like having a sun-rave for your eyes, but it’s also a trigger. I bought some prescription sunglasses and these really help when driving.
  • Weather – believe it or not, the changes in the seasons seem to affect my migraines. Autumn seems to be the worse time for me.
  • Dehydration – this seems a simple thing to avoid but this was my biggest problem. I never drank anywhere near enough. I now ensure that I drink at least 3 litres a day although you should drink more if you can. For me, this is not drinking boring water all day, I have tea, orange or Ribena, but you should avoid fizzy drinks like Coke, Pepsi etc. See the infographic here to see how much you really should be drinking based on your weight, it’s an interesting formula.
  • Stress – The silent killer. Never underestimate the amount of stress you are under. I thought I had no stress whatsoever, but there was. Stress is not always being busy at work – I’m sure we are all busy at work, but its personal situations, health, money, kids, the gardening – virtually everything in your life can be stressful, don’t ignore it.

Final Thoughts

My final thoughts are this, if you have not suffered from migraines, then firstly you are lucky and I hope you never do, but if you feel that you have the right to judge those who do suffer, please ensure that you have all the facts and understand what sufferers are going through.

Also, understand that there is a whole range of different migraines that people can suffer from. Some are minor, but like mine, they can be severe and cause a monumental strain on your home and work life as well as your ongoing physical and mental health.

If you want to see the suffering that migraines cause to people, just head over to Twitter and look up the hashtag #notjustaheadache as there are always people sharing their experiences there. It’s horrible to see just how many people suffer and there are no real cures for it.

Ignorance is not an excuse so if you know someone who suffers from migraines, please take a little time to educate yourself about them before judging them – migraines are not “just a headache”.

Infographics

There are a number of interesting infographics out there about migraines and water intake and other things that might help. Below are a few that I found of particular interest.

Water Intake

There is a good formula that you can use to work out how much you should be drinking per day.

Your body weight divided by 2 = ounces of water to drink a day

As I’m in the UK, I’d prefer to use litres of water, so I’d use:

Boy weight divide by 2 then divide 35 = Litres to drink a day (using approx 35 ounces in a litre).

So let’s say you weigh 180 lbs, you would then use this breakdown of the formula and it will give you the number of litres to drink a day:

180 divide by 2 equals = 90

90 divide by 35 = 2.5 (litres a day)

Daily Water Intake
Daily Water Intake

Body Water

This infographic shows you how much water you actually have in your body which is why you need to ensure that your daily intake is correct.

Body Water
Body Water

Facts About Migraines

This infographic shows some statistics from America about migraines. It shows not just the amount of people that suffer but also that financial costs to businesses.

You can download a PDF copy of this below the image if you wish.

Why Migraines are not “Just a Headache” 1
Facts About Migraines

The Physical, Social and Economic Effects of Migraine Attacks

This infographic gives a really good set of examples and statistics of how migraines can affect people.

The Physical, Social and Economic Effects of Migraine Attacks
The Physical, Social and Economic Effects of Migraine Attacks

What’s Causing my Headache?

This is a slightly different infographic which concentrates on the causes of headaches and migraines. Quite surprising what can actually be a trigger…

What's Causing my Headache?
What’s Causing my Headache?

Light Sensitivity and Migraine

This is an interesting infographic on the effects of light for migraine sufferers.

Light Sensitivity and Migraine
Light Sensitivity and Migraine

Top Symptoms of Vestibular Migraine

These are just a few of the symptoms of a Vestibular Migraine.

Top Symptoms of Vestibular Migraine
Top Symptoms of Vestibular Migraine

Comments, Questions or Feedback

I hope that you have enjoyed reading through my own personal experiences with migraines. Something I noticed when I was suffering so much was the lack of information in relation to really severe migraines.

There was plenty out there about headaches and the usual “four-hour” migraines but mine were much worse and lasted much longer. I always had that horrible feeling that no one believed me as to just how bad these episodes were as most people do think that migraines are just headaches.

After a lot of research into severe migraines, I really do hope that even if this post helps just one person realise that they are not the only one with severe migraines and there are other suffers and treatment out there for them, then it’s been worth the days of work putting this together.

If you have any questions whatsoever that you would like to ask me or others that will read this post, please feel free to leave a message in the comments section below.

I would also appreciate any feedback on this post, whether you hate it or whether it has helped you in any way. It makes the time spent putting it together worth it knowing that someone is actually reading it!.

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3 Replies to “Why Migraines are not “Just a Headache””

  1. Is there a cure in psilocybe cubensis for cluster migraine sufferers…I thought I saw that some where at some time. Anyways great 👍 article my heart goes out to you and all that suffer through these afflictions.

    1. Not sure to be honest, but since I’ve been on Amtripyline things have been much better, not a cure and not pleasant either, but much better. I just wish there was more coverage about how bad migraines can actually be rather than them being trivialised by most.

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